What If Accessibility Was Also Inclusive?

It’s hard to articulate what it feels like to spend a lifetime being told that you are not allowed. Not always in so many words, but in gestures, in spaces, in thoughtlessness.

This is An Unquiet Mind, a National Magazine Award-winning monthly column by s.e. smith that explores disability identity and its interaction with the world at large.

Going to a concert is no minor matter when you are a teenager in a small town; it requires, among other things, friends who are middle class enough to have their own cars with parents cool enough to let them take those cars on road trips. You cruise down winding roads and busy freeways, body thrilling with excitement, music loud, singing along—but as you grow closer and closer to the band shell, your anxiety gnaws at you, consuming you while everyone else looks for parking and tumbles out of the car. Your stomach knots and you pass on burritos to sit in the shade, folded over your legs, willing yourself not to vomit. Your ticket, ordered by mail, because that’s how it was done in those days, grows sweaty and damp in your fingers.

You imagine the long line, anxiety mounting over unassigned seating, people crowding in, music amped slightly too loud. You want to imagine merging into the crowd, call and response singing, dancing, but instead you are dazed in the heat of the park as sweat pools at the base of your spine, your heart pounding. Someone looks at you pityingly.

“You go on,” you say, and after a token “are you sure you’re okay,” they do go on. They’ll find you later, reading a book by the fountain. If you are blinking something back, it might just be the glare of the setting sun.

You go to whatever chaotic, crowded house rented by last year’s seniors you’re crashing in, and “how was it,” they ask, and everyone says “great” and you say nothing at all, burning with shame and humiliation before fleeing to hide in the bathroom on the second floor.

*

It’s hard to articulate what it feels like to spend a lifetime being told that you are not allowed. Not always in so many words, but in gestures, in spaces, in thoughtlessness. You are abnormal, strange, unwanted. Your needs are not our needs. You deserve only what we are willing to give, no more.

The ADA is about to turn thirty and still I hear I am “too difficult.”

My needs—accommodations—are “special treatment,” an imposition. My desire to be part of the world is absurd and unreasonable. As though it’s unfair to need and ask for a thing and get it. If we give it to you, the logic goes, everyone will be wanting one.

“This was fine for someone else,” someone frustrated at being asked to accommodate me says, as though I am not an expert on my own self, as though all disabled people have the same needs. Why isn’t this thing that someone who isn’t you found perfectly acceptable enough? We spent all this money on it. As though being disabled does not in itself confer a literal body of knowledge, an expertise, a skill, an awareness of precisely what I need—because I have spent a lifetime fighting for it. I have a mastery of myself, a master’s degree in myself, yet I am followed, everywhere, by reminders that myself is too much.

A volunteer in a painfully bright shirt leads me down a hallway when I ask how to get to the elevator at an event someone has paid a lot of money to bring me to, at a swanky new hotel that still smells of paint and sawdust. She smiles brightly and chatters politely as I focus on dragging myself across the thick rug, body swollen and painful from flying.

“They gave us a key just for you,” she says, pulling a wall panel open to expose a freight elevator, floor sticky with mysterious spilled things. She fumbles with the buttons and we rumble slowly, painstakingly downstairs. It drops us into the heart of a commercial kitchen—hot pans and chaos and shouting and smells. We must duck past someone breaking down a side of beef just to reenter the public side of the hotel.

“Just let me know any time you need it,” the volunteer says, cheerfully, genuinely believing this is access. I do not have the heart to be cruel to her, because I know it is not her fault, but every part of me wants to be cruel as I watch her scamper up the sweeping line of the two-story staircase that leads back upstairs.

When people think of accommodations, they often think of the physical or in concrete concepts: Ramps, elevators, ASL interpretation, curb cuts, content (trigger) warnings, priority entry.

They do not think larger, beyond: What if accommodation is inclusion, and making people welcome? What if accommodation is acknowledging that everyone, regardless of disability status or need, has a right to participate in public life? That needs are not necessarily linked to disabilities, which may vary over time, and accommodating them builds a better culture for everyone? What if, instead of fixating on the things people cannot do and grudgingly working around them, we rejoice in diverse experience, in making space for one another, in kindness, in care? In the ways our knowledge of our bodies and lived experience inform our articulation of our needs?

What if accommodation is inclusion, and making people welcome? 

Maybe you are tired and need to sit, for instance. Here is a chair. Maybe you are pregnant and feeling dizzy. Here is a chair for you, too. Maybe you have difficulty standing for long periods due to a spinal cord injury. You also should have a chair. The need is the chair, to allow you to participate. Why you need it is less important. You know what you need and you tell me and I do not assume anything more.

I watch things that were impossible before the Covid-19 era—chairs for everyone, rather than a bitter fight to be permitted a single one—suddenly become standard, and I think: What if society had valued disabled people all this time? What if society didn’t have to hastily accommodate remote workers because we were already here, fully valued? What if society didn’t have to scream about wearing a mask to the grocery store because caring for yourself and others was part of the fabric of life? What if society recognized that access is equity? What if society thought forcing people to fight their way through a crowded kitchen during service to participate in an event was not okay? What if concerts had sensory-friendly spaces?

Accommodations only became “worth it”—acceptable—when they became personal, when, suddenly, they affected the people who previously believed they would skim through life untouched. Then, they were everywhere, the subject of helpful guides and aspirational Instagram spreads. They were no longer threatening, no longer special treatment, no longer impossible. They shifted into the new status quo because everyone needed accommodating.

What is perhaps most tragic about this is that this was all disabled people ever wanted.

This, a world where everyone is able to participate without feeling shame or fighting tooth and claw for a seat, could be our shared future, if we want it. But I need you to want it.

*

My plane on the way home from a trip to visit friends got caught in a waiting spiral over the Bay, fog at SFO slowing air traffic control. We drifted lazily. I gazed out the window, book forgotten on my lap, watching the Bay Area slide beneath us, imagining I could see my friend’s car on its way to pick me up, leaning forward with the aircraft as it banked and swooped back to Earth, rumbled over a maze of runways through the gloom to the gate. After the airport disgorged me from its hungry maw, I balanced awkwardly on the curb, looking for a familiar car. When it emerged, something lifted away from me—not just the stress and demands of travel but the expectations that I play normal. My friend would toss me a drink and put something good on the stereo and let me just be—no expectations of small talk. Years of knowing one another has led to countless tiny unspoken accommodations like these between us, in a friendship built on valuing our mutual humanity.

As we drove over the bridge and through the suburbs, I caught sight of the park where I waited all those years ago, a lifetime away. A familiar song came on. Was it? It was. We have changed so much since then, but neither of us could resist turning the stereo up to sing along.